Need Advice For Undiagnosed Symptoms. Posted: 12-17-04 11:19am
Hello everyone.
Let me get right into it. For the past
three months i've been experiencing
symptoms: extreme tireness/fatigue, joint
aches, muscle aches, rashes - on cheeks
adn forehead, and chest and neck...At
times from driving home in direct sun (i
also get this from beach trips, too much
sun despite sunblock and straw hats - then
I get a horrible rash on my chest/neck and
at times my shoulders and elbow area, and
start feeling like ahve the flu), sore
swollen lymph nodes in neck, mostly in
armpit and groin - extremely sensitive the
week before my period, almost daily
headaches - mostly on the right side of my
head, migraines 1 every month to two
months, hair falling out (but not in
patches, just generally falling out - I
have to clean the drain everyday and then
clean my brush or comb, and now I have
fine little hairs that stick up and I
don't really think my hair is just
breaking off, can't really expain it.),
and extremely cold - especially my fingers
and toes. Like right now, it's in the
70s in my office and i'm in a shirt and
sweater, not even warm, but my fingers are
ice cold and my toes feel like i've been
trudging through snow. I've also had
some kind of raise red, burning hot
somewhat itchy rash that 'appeared to be
shingles' 3 times in the past two years.
And the last occurance was the beginning
of september and i've had all the above
symptoms since then.
8 years ago I was told that I tested
'positive for the pattern of lupus', but
to not worry about it. I jsut had my
thyroid tested, and it is fine, then
tested for lupus becuase I mention the
previous positive test despite my Dr. Not
really thinking my symptoms were
related...And it came back negative, I
guess...I havent' really been able to
discuss the results with her as she hasn't
called me back despite my calls to the
nurse. I'm really frustrated with
feeling lousy and still have to appear
that I have it all together. I just feel
like sleeping under layers of
blankets...All the time. That is all I
think about is resting and I just don't (i
know I shoudl make time to rest) take the
time for a nap. I work full time and
drive 130 miles a day to and from the
office, that doesn't leave much time to
'nap'.
Can anyone give me some advice? I'm not
sure what to do or where to turn, I only
know I need to do somehting to help me
feel better. Please help. Have a great
day!
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Kelly May
New User, Becoming EHEALTHy
Joined: 20 Dec 2004 Posts: 3 Location: Australia
Posted: 12-21-04 06:11am
Hi there susan
firstly my advise to you would be to not
to accept no for an answer. You will soon
realise like the rest of us lupus sufferes
that your primary responsibility is to
yourself not to a doctor who may or may
not be fully equipped to know what is
really going on with your body. Never
doubt yourself. Especially if the
symptoms are visible to you and others
around you. Take someone with you who
knows the extent to how this is effecting
you. Also a very valuable piece of advice
that I used during my early days of being
diagnosed (over a 1 yr period, mind you)
is to take photo's of your rash's because
if you are anything like me my rash's are
never present at the time of a specialist
visit. The other thing is that it is also
good to find a female gp that u can see
you at short notice when you are flaring
and she can then record any visible
symptoms. I am not discounting male gp's
but in my experience as lupus flares with
periods etc female doctors are a little
more understanding at the gp level. Of
course most specialists are males and are
excellent and if they see your case
history stated in writing it makes them
think twice when looking at your
diagnosis.
You have to be very specific with your
primary care practioner. The best way to
do this is to keep a daily diary. Include
your premenstral details as this is
usually the most prominent time of
symptoms. This is very benificial to
yourself, doctors and those around you who
support you, as you can usually pre
determine those more difficult times and
also this will help your family to plan
outings etc around these times.
The most important thing is you have
realised your symptoms and from using the
4/11 symptom criteria for lupus, you are
aware that lupus may be a real
possibility. You can find a copy of my
letter on the board which will give you an
insight to where I am at with lupus. I do
know that the sun is and heat are truly my
enemy and a tale tell sign for my rash
flaring, chills, swollen glands, joints
and fatigue. Don't forget to record in
your diary your sun exposure and
physically demanding activities.
My very best wishes for the festive season
- take care
kelly (australia)
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BLUE4ME
New User, Becoming EHEALTHy
Joined: 17 Jan 2005 Posts: 28 Location: TENNESSEE
Hello Posted: 01-22-05 00:22am
I have found it very helpfull to keep a
health folder... If I feel bad on one day
I write how I felt ..Headaches , rashes..
Watch what u eat..Rashes could be allergic
reactions to something you have eaten...
Took me forever to figure out I was
allergic to pork.. Doctors did skin test
and said I wasnt..But if I eat it or put
it on my tongue I will swell.. I dont
have to swollow it. Face, lips, throat
and get hives as well.. This is n0t fun
at all..I look as if someone beat me black
and blue..Keep a food book..
Now days in my opioions most doctors wont
to give us the quick fix and send us on
our way..They dont wont to find out whats
causing our problems.. And fix it.. If
theres a way..What ever happen to those
old time doctors.. Now theres all these
new ones whos after money ... And not the
well being of the patient.. I should know
my sons been deathly sick for almost 2
months went to emergency room 2 times in
dec..Nothing was done they claimed he had
virus.
Monday he comes home sick worse than
ever.. Tuesday hes really bad..Took to
doc, he sent us straight to emergency
room.. Got ct done.. Showed a obstuction
it colon big time..But still nothing was
done to remove it..Sent home.. Went back
to doc next day.. Then he refered us to a
sergian which this man really cared ..He
told us to do one thing but then 6am he
calls and says no dont do it ..Go to gi
doc and let him go in and take out stuff..
So we did.. Today my son is not in pain
and trying to get back to normal..Still on
liguid diet until monday.. With no dairy
products ..But our last 3 doctors really
cared..All 3 have called me on my cell and
asked about him.. And told me to call
them if I needed any advice or
anything..
I have never in my lupus years had any
doctor offer this kind of help to me..If
my insurance would take that doctor ..I
would go to him.. But my insurance is a
goverment type insurance.. Called tenn
care.. Which in tennessee..We are fixing
to get cut out of.. And I dont have a
clue as to what I will do if I loose
it..Because with lupus.. Gosh, im so
cluby, I seem to fall or trip or twist and
hurt something.. Never fails..
I guess I got off the subject.. It helps
for me to like get it out..So...
Anyway.. Good luck to all.. Wish u all
the best of it..
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nadeentears
Experienced User , Rather EHEALTHy
Joined: 25 Jan 2005 Posts: 78 Location: Canada
My Sympathy Posted: 01-25-05 19:41pm
Lupus is a desease with thousand faces.
Red rashes is part of it. I diagnosed
with sle six years ago. I take plaquenil
and celebrex for the pain. Now my doctor
changed celebrex to apo-prednisone. I
consulted my specialist every 4 months to
follow check up with her. The day I visit
her there is no symptoms for lupus but I
used to keep some notes with me to tell
her. Lupus flare at any time and the
symptoms are severe and painful.
Sometimes I can not take stairs, raise my
hand to comb my hair, open a bottle or
open a water tap. Increased fatigue,
tiredness and heat inside my body as if my
blood is burning. You are the one who can
figure out that symptoms and no one else.
You should listen to the language of your
body. Whenever u feel that symptoms do
your best to relax and have some rest.
Don't feel guilt that u can not take care
of your household. Your family must know
about your illness and try to help and
support you. Enjoy your life, participate
with outside activities this might gives u
some pleasure and happiness. You will
feel better and satisfied that u have done
somethinf usefull in your days. My heart
is with u all who are suffring with lupus
or with any other disease.
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bdennard
New User, Becoming EHEALTHy
Joined: 03 Sep 2005 Posts: 7 Location: Warner Robins, Georgia
Positive Diagnosis Or Not Posted: 10-01-05 17:06pm
I am so frustrated with my doctors. I
have been to so many doctors and I am no
closer to a diagosis. I've had 2
pheumatoid profiles that have both been
positive. My white blood count is very
high and I feel like i've got the flu
all the time. I have a reoccurring rash
on my face, neck, and groin area. They
did a biopsy and I am waiting for the
results. Why can't they tell me if I
have lupus or not? The rheumatologist
has mentioned sjogrens disease and behcets
syndrome but he can't give me a definite
diagnosis of lupus or the other two
mentioned diseases. I have constant
fever, headaches and not to mention I have
had unexplainable and uncontrollable
seizures for 3 years now. As you can
tell, I am so frustrated and confused. I
did have one drug that helped my seizures
but it lowered my platelet count so much
that I had to be hospitalized for
petechiae rash. I was a middle school
teacher and had to retire due to my
seizures and now I am confined to my home.
I just want to feel better. Does
anyone have any advise for me? I have
not been started on any treatment yet
except just topomax for my seizures and
pain medication for my aches and pains of
migraines and joint pains and of course, I
am on antidepressants and anxiety meds and
meds for mitral valve prolapse. Any
encouraging words out there?
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nadeentears
Experienced User , Rather EHEALTHy
Joined: 25 Jan 2005 Posts: 78 Location: Canada
Posted: 11-09-05 02:20am
You have to cope with your situation. I
spent 4 years under diagnoses and seeing
doctors until I was diagnosed with lupus.
I was stressed and frustrated. I started
to lose my family , then I started
thinking about my situation. I found it
hard to live alone and lose those who love
me and nothing will change . My lupus
will be with me till I die, nothing cured
lupus, u only follow treatment and
continue taking drugs for the rest of
life. You take drugs to control lupus and
stop it from getting worst , so u have to
cope with it and live your life . No one
knows when he will die ? Or how he will
die ? Yesterday I lost one of my
relatives. She is a doctor and very
young. She died in car accident . Peas
be upon her soul . I know that this is
not our topic but I found it a good chance
to tell u how is life . It is short and
we have to enjoy it and take every moment
of it to live it happily and in peas .
Others are suffering the worst. We have
to be happy of what we have. Lupus is not
that dangrous disease as cancer. Don't
worry and live your life follow treatment
with doctors don't give up .
